Open Heart Surgery

Things at the Hammond household remain full throttle busy and at times hectic. Ella is amazing and is adjusting better than we could have hoped. She is using sentences now and new English words daily. “Colin at school” “Baby is tired” “Ella go outside” and the list goes on. Today we told her Colin’s and Carleigh’s middle names. This evening out of the blue she walked up to me and said “Colin Andrew”. It is so exciting to see all the changes she is going through. In a matter of weeks she went from never being on a swing, to the baby swing, to a big girl swing needing to be pushed and just today she is pumping her feet and propelling herself on the swing. Brought a smile to my face to see her on the swing, but also made me feel like she is growing up too fast. She is learning to count to five, knows most body parts and repeatedly announces where every family member is (home, school, flying). Ella tries to sing the ABC’s which goes something like ABABAB but to the tune of the song. The patty cake song is a favorite. She dresses herself with minimal help. She enjoys brushing her teeth and even started taking naps this week (that was a big feat for all of us). She has met extended family and friends and they have all welcomed her with open arms. She has felt their love and has warmed up to them quickly. We are so grateful to everyone for taking such an interest in her. Ella smiles come freely and sad moments are very minimal and usually only when she is extremely tired. Ella is a big fan of Colin and copies everything he does. If he sits a certain way, she folds her legs like his. If Colin burps, she burps and on and on. She desperately wants to play soccer and go to school like her big brother. Colin has warmed up to being a big brother and seems to have “re-found” his place in the family. Ella also enjoys watching out for baby sister Carleigh which is welcome as Carleigh thinks anything and everything should go in her mouth. We loving refer to her as the billy goat. Ella has helped rescue her sister from a tortilla chip, rock and various pieces of paper!! Ella gives us kisses but it is always on her terms. However, she is smothered daily with kisses from the rest of us. Ella knows the “I love you” sign and uses it regularly -especially at bedtime. I can’t wait until the day we hear the words - that will be yet another moment for happy tears. Ella is a joy and life at the Hammond’s is better with her in it.

She had been referring to herself as Ella but in the last two weeks consistently refers to herself as Jia. The rest of the family now calls her Jia on occasion as well. Her Chinese name is JiJia. Paul and I talked and plan to change her name to Ella Jia once all the paperwork is final. It was a big discussion on what to make her middle name initially and Jia was one of the options. Now we know it is the right one. We have never used Renee and that doesn’t suit her.

Alright, I will address the dreaded surgery. I keep hoping if I don’t talk about it, it will go away. Open heart surgery is scheduled in a little over two weeks on October 21 at Riley Hospital for Children here in Indianapolis. It is a major surgery. As many of you have stated, she doesn’t look sick. No, she doesn’t. Her limitations are not glaring. However, when you around her long enough you will notice she becomes short of breath with minimal exertion – such as walking up a flight of stairs or from the car into a store . Colin stated it the best last week when he observed “Ella copies everything I do. Except I’ve noticed that when we are outside she doesn’t run around like I do.”

It is hard to explain in writing what they will do as you have to understand her anatomy which is NOT normal in any way. A picture of her heart is in the prior posting. For those who need details, they will be doing the rostelli and mustard-senning procedures and then baffling the blood flow. The short of it is that they will connect the aorta to the left ventricle, close both the VSD and ASD, put in a conduit from the right ventricle to the pulmonary arteries, tie off her existing shunt, and baffle the blood flow (move from right to right and left to left chambers). She will be on heart/lung bypass for the surgery. While we are obviously concerned for her well being we are also pleased that it appears at this time we can correct her heart. Once surgery is completed, her heart will flow/work like it was intended to. That is good news. No more being short of breath, blue fingers/ toes and the clubbing of her digits may even go away. The doctors are encouraged both by her age and current health. If we do not do the surgery she will in her 20-30's begin to have major problems as the right ventricle is not designed to be the body’s main pump. Without "fixing" her heart she will have a shortened life span and her quality of life will decline. They can do things to help along the way but they will never correct the core problem like the scheduled surgery is intended to do.

After the surgery, they will need to replace the conduit once, maybe twice. The reason being they cannot put one in that is big enough right now (her heart/body is too small to accept a full size conduit). Once the correct conduit is placed, she theoretically won't require any additional open heart surgeries. They should be able to maintain the valve in the conduit through a cath procedure.

Of course there are many risks with the surgery/her heart anatomy in general. Death being the most frightening of them all. She may also require lifelong medication to help her heart rhythm, she may require a pacemaker at any time for the same reason. Both of these remain a risk regardless of the surgery. They may also get into the surgery and for various reasons find they cannot do what they intended. At that time they/us will discuss options (quickly). There are some back up fixes in mind should they be needed.

It is a bit overwhelming at times. We have talked with 3 different doctors to make sure we have all the information we need. We feel as confident as we can about the surgery. Ella is learning her external body parts to which we have added HEART :) It doesn't matter, this WILL NOT go well for her even if I did have language on my side. She is three and a fighter. The fighter part we love about her and is a plus in my book for the surgery. Colin knows Ella will have a surgery and there is a possibility they won't be able to fix her heart. He asked last week if she could die – we had opted to not offer up that information but didn’t lie when asked. Kids are so darn smart!

We will plan to blog during our up to two week stay at Riley. Please keep our family, Ella, the doctors and staff in your prayers. I won’t lie and say we aren’t scared or that there isn’t any stress in our house right now – there is. But what I do know is that God brought this family together and He is in control. I will trust in Him and lean on Him for comfort and peace. Open heart surgery on my precious 3 year old daughter, HE is big enough to cover that.

Ella's heart cath

So much to share but it is late and I’m tired so this will focus on today only. We will write more about Ella’s adjustment and family life next time – both are going well.
So today was the exploratory cath procedure. We arrived at 8am. The doctor’s came to our room and explained the procedures and of course the risks. I was surprised how much this impacted me. Of course I knew what the risks encompassed but it is different hearing it in relation to your daughter. They gave Ella Versed in hopes to relax her before using gas to put her asleep initially. She was laughing and doing flips in daddy’s lap so not sure how effective the Versed was… Time to head to the procedure room and she knew something was up. There was NO way she was going to lie down on the cart so they allowed us to carry her back. She cried and wouldn’t lay down once in the procedure room either (in typical Ella fashion). I held her and she reached out for Paul. Oh, it was heart breaking! The watermelon scented mask went over her face and within a minute she was out. I left in tears and Paul held me and said a prayer. We made our way to the 4th floor to wait for the 2-3 hour procedure to be over and to receive the news. I was a nervous ball of energy. I called a good friend for support and more prayer and that did the trick. Of course the brownie, candy bar and meal from McDonalds also helped. At hour two I paced the floors and played games on my phone. There was a nice distraction when the “Parent Comfort Cart” rolled by and they came in to ask if we needed anything – really? It was the best. Everything from snacks to personal care items and even neck roll pillows, all free of charge. Paul told them I needed deodorant. As the man pulled out the tray I shot him my dagger eyes!
Finally 2.67 hours later the doctor rolled in to the waiting room. Tell me, tell me, tell me. He smiled and said the procedure went well, actually, as good as it could have gone and Ella was being recovered – whew! Then we talked anatomy and possible options. So the main thing everyone wants to know is what they will be doing to help her and the short answer is – MAJOR OPEN HEART SURGERY. While this is a scary proposition and we don’t yet have all the details it is also good news. The fact that we can even consider/do the surgery is a big plus. Okay, now for you medically minded people who need to know the details – her heart anatomy is a conglomeration of problems. Per the doctor, she does not have complete transposition of great vessels as neither ventricle actually pumps to the lungs. Say what! Yep, the shunt is the way she receives her oxygen. Her O2 saturation today was 90 – big sigh of relief. Of course she has already demonstrated with crying or exertion she easily drops in to the mid 70’s. She has a “massive” hole between the ventricles. Not the biggest he has seen but a “big one”. There is a hole between the atria. Here is the most amazing part – her right atria is over the left ventricle and the left atria over the right ventricle. Slow down and read it again. I pondered this for awhile and then finally asked how exactly this happens and was correct is assuming the heart “twists” during formation. Per the doctor this took place between weeks 3-5 of development. Note it took an hour of pressure to stop the bleeding (yes, we will be testing for a clotting disorder, no meds on board). We have attached the drawing of Ella’s heart anatomy for your viewing pleasure. The picture of Ella’s heart is correctly tilted in the opposite direction of the normal heart. It also sits right of midline slightly.
Alright many of you want to know details about the fix – for now all I have to say is that it is COMPLICATED but doable. There are a couple of options but the main goals will be to make the left ventricle the pump (as it should be) for distribution of oxygenated blood to the body, the VSD repaired, and a new shunt placed. Yes, they have exceptional surgeons.
So a nurse comes almost running into the waiting room asking us to come back as Ella is becoming agitated – never a good sign. We arrive just in time to see Ella crying then screaming and writhing in bed. No, she wasn’t in pain. She is a three year old who doesn’t like to be told what to do, plus she is scared to death. As a side note on at least two occasions I laughed out loud when I was told that the plan for keeping her calm and flat for 4 hours after the procedure involved no additional sedation and only Tylenol. Oh, alright, if you say so. Anyway, after 20 minutes of screaming, the ear piercing type, crying and trashing about in bed the nurses ask what calms her down what types of things does she like? I laid it out there and told them she wants out of bed and that is the only thing that will make her happy. One nurse assures me she is just trying to find a comfortable position and we should let go of her and then all will be well. Two seconds later guess who is on her way out of the bed all the while giving off ample attitude with exorcist rivaling “NO’s” to the staff. They finally get the hint and some scramble out the door to call the doctor. Now they think it might be a good idea for some sedation – what took you so long! Another nurse in the room asks me if Ells would calm down if she could sit in my lap. I say yes but not if it is in the bed. We had WAY surpassed that opportunity. They figure she is no longer hooked up to any of the monitors from all the trashing so what can this hurt. On the way out of bed I notice fresh blood. I was relieved to know she only pulled out her IV and that she is not re-bleeding. So for four hours Ella lay curled up in my lap on a chair. It took her an hour to finally calm down and fall asleep. Yes, they did return with sedation medication but anytime the staff came within 5 feet of her, Ella made it clear that they were not welcome. For all you nurses – no vitals were taken during the entire recovery period and the site looked at once by me with a nurse standing nearby. The moral of the story is – don’t mess with Ella!! The staff was kind and did know their stuff but they got the message and are already planning differently for our next visit.
Paul and I are awaiting a detailed phone conversation with Ella’s cardiologist - we hope tomorrow. We have been led to believe that the surgery will happen sooner rather than later. There is medical reasoning for this but I’m too tired to explain. Is soon a couple weeks or a couple months – don’t know yet. She will most likely be in the hospital for 2 weeks. Anyone have a coupon for open heart surgery that we could have - maybe 50% off?
There is a lot going on at the Hammond household. I will not let her medical condition overshadow the amazing little girl she is or how she has blessed our lives and fits into our family with precision. God is in control. He has been since the beginning of this journey. There is no fear for fear is not of God. Is there concern for her well being, safety and protection of her heart – yes. God will cover those as well. Thank you for your prayers.
Happy 7th Birthday Colin Andrew!!

We Are Home!

We have been home a little less than 48 hours now. Coming back to the states was soooooo nice. You really never realize how much you miss home until you are away. I think both Paul and I feel we are blessed to live in the USA – for so many reasons. The plane rides home were long. Ella doesn’t like to wear her seat belt and screamed at the top of her lungs to announce this to everybody on the plane both at departure and landing – JOY! She also spoke Chinese in an angry voice and we are sure she was letting the world know that we are awful parents J She threw up 3 hours in to the 14 hour plane trip. Probably from being so upset. We survived and are home and that is all that matters. Paul and I were instantly emotional upon landing in Indy. We couldn’t help ourselves. I will never forget turning the corner and seeing Colin! The tears flowed as we hugged and kissed. Carleigh was void of emotion at first. I handed her back to my Aunt and she cried because she wanted me to hold her – happy mommy moment. Ella was quite at first and then broke into tears of her own. Paul and I rushed to hold her and within a few minutes she was on the ground standing next to her brother and holding his hand – our hearts be still. Colin and Ella bonded instantly. Ella had smiles and opened the gift Colin brought her – Kai Lan play set and silly bands. The silly bands were a hit!! Colin and Ella never stopped standing next to each other the rest of the night. Our family and close friends were at the airport to meet us and a dear friend and took pictures to capture the moment. It was so nice to see everyone and be surrounded by love. We were up to 2am visiting with the kids and telling stories about our journey. We are still catching up on sleep and I have a nasty stomach bug to make things all the more interesting.
Ella is doing remarkably well. She follows her big brother’s lead and for the time being, Colin is agreeable to this arrangement. Colin takes his time to show Ella how to do things and repeats words for her. He is being a stellar big brother and is a great help. Ella seemed to know from the moment she walked in the door that she was home. She walked in like she owned the place and checked everything out. The toy room was the big draw. She is eager to learn the Hammond family ways and tonight put away all of the neighbors shoes when they came to bring us dinner J There are moments of sadness and she seeks us out and we hold her. She is a daddy’s girl. The screaming and fit throwing continue – mostly over sharing. Even that is only once or twice a day so maybe it is just normal 3 year old behavior. Ella repeats may words each day and uses them correctly. I asked her today to please put away her shoes after coming in from outside and she did just that!! It amazes me how much communication really is taking place with such a small use of vocabulary spoken on both ends.
Ella saw the pediatrician today and all seems to be well. She needs to have shots which we are putting off for a week and some blood work done. We head to the cardiologist tomorrow for several tests and to talk with the doctor. This will be a telling visit. We obviously know there are heart issues but I’m hoping to get a better picture tomorrow of the extent and options for treatment.
We are grateful for the opportunity to expand our family. There are and will be bumps as we figure it all out and come up with a new routine. However, Ella is a perfect fit in the Hammond family. God’s hand is all over this and it feels good. From the way the referral happened, to the people we met and shared the adoption process with and then the home coming. It is right, it is good and we are blessed.
We will continue to post updates but less often. Thank you all for your support. Love, Paul, Amy, Colin, Ella and Carleigh

Heading Home!

It's our last night in Guangzhou, China. Tomorrow we fly to Shanghai then to Newark and onto INDY!!! We are sooooo excited. It is going to be a long trip but it is just nice knowing we are headed home. After purchasing a third suitcase, we are all packed and ready for our trip. Ella is a little sad tonight and we think she knows something is going on. We had the guide talk to her yesterday and then today one of the store owners reinforced that she is taking 3 airplane rides tomorrow. I don't know how to make things easier on her except to be patient and to love on her. She is about to experience the change of her life. As is the whole Hammond family :) All we want when we get home is a soft bed, American food, and of course to hug on Colin and Carleigh!! Soon....

Our last days here

Two more nights and one more day and then we get to start the trek home - yippy!! Most of the families left this morning and the remaining few all leave tomorrow morning, including our guide. We will be on our own for a day and then we leave bright and early Saturday morning. I don't know if it is appropriate for prayer - however, another upgrade to first class for the trip home would be nice :) Things are going well. Actually, they are great. She is a joy. Right now Daddy and Ella are laying in bed, laughing, singing and having so much fun. The kisses, hugs and smiles come often. Yesterday when Paul would walk away, Ella would become concerned and look for him. Of course the melt downs still happen daily, as they should for a three year old, but they seem to be shorter in duration today. We tried the swimming pool today and that was NOT a hit. She isn't a big fan of baths and never even took her shoes off at the pool. I bet brother Colin will be a good influence at our neighborhood pool. Ella talks to us in Chinese all the time now. We need to record her and have someone translate. Fun side note, one of the families who adopted a 4 year old girl found out that she was saying to them in a joking manner "I will beat you to death". They of course were repeating it back to her without knowing until a guide clued them in!! All the guides we have had comment that Ella is a very smart little girl. A couple people have even asked if she is older than 3 1/2 and if her DOB could have been estimated incorrectly(no she isn't and no it wasn't). That's our girl!! Paul thinks she may be a genius, I think he may be biased :) It is amazing to think how things were just over a week ago and now I'm watching her wrestle and interact with Paul like she has known him forever. We couldn't have imagined a better transition up to this point. Now we are excited to get home and hold Colin and Carleigh and for them to interact with their new sister. It will be fun to see how the family dynamics work out. Not sure who will talk more - Colin or Ella!!

Official!

Ella and Mommy

Ella and Daddy by the pool

menu item at our Chinese restaurant

Near our hotel in Guangzhou

Today we swore in Ella at the US Consulate here in Guangzhou. She is 99% official. The US government recognizes her as a future citizen. All we do now is receive her US visa in her Chinese passport and then go home. When we pass through US customs in Newark on Saturday she will be an official citizen!!! It was an emotional moment when we raised our right hand and swore her in. It was 4 years work/wait that came down to one moment. I will never forget it.

We are so anxious to come home. We have two more full days left and they are going to be very hard because we have nothing to do and we just want to go home. We will have to find a new way to kill two days. We have shopped and shopped and shopped. We will have to buy a new suitcase for all our bounty. There is no room in our current/future bags nor is there money left for more shopping. Unfortunately,shopping is about all there is to do here. It's almost like they planned it that way.

Our close friends who we spent 4 days with in Wuhan and who are our neighbors here at the White Swan Hotel left this evening. Two days before us. That's a tough pill to swallow. We are very happy for them. They are amazing people. Most leave tomorrow. A few leave on Friday. We are the last to leave on Saturday. Even our guide will leave on Friday. That's the last time I let a travel agency plan our trips (they were HIGHLY recommended by our adoption agency).

Enough complaining. Ella is just amazing. Right now she is a daddy's girl and I am going to enjoy every minute. She is the typical curious 3 year old who likes to test us. She wants to be in control. She wants to decide if her hand is held. She demands to be held or put down. When we take control of the situation she will let us know of her displeasure by pouting, turning her back, or throwing a fit. She loves to rough house. She likes to be thrown up in the air. She loves to be spun around. She has this silly game of hiding items behind her back (we can plainly see them) and the says something in Chinese that means "where did it go?" She will play this game for hours if we let her.

Tonight Amy and I were laughing and playing on the bed with Ella for a good 30 minutes. We were having a great time. We were probably annoying our neighbors with the noise and laughter. Ella then told Amy that she had to use the bathroom. Amy went with her to help her get up on the toilet. When Ella came back she had a complete change of mood. She was very sad. She walked over to me and just stood by me and looked at the floor. Her face showed her pain. I carried her to the bed and we sat next to Amy. Ella had the saddest face. She nearly cried as she sat motionless on the bed. We talked to her, rubbed her and we tried to re-assure her. I think something triggered a memory of her foster parents and her old home. She was a different person from just 5 minutes ago. Amy and I held Ella as I said a prayer and asked for help. A few moments went by and Ella came out of her depression. She started by touching my nose very softly. She would then flip sides and touch Amy's nose. Every minute she became more active and animated until she finally smiled again and even laughed. Ella went from a little girl who was shut down with sadness to a laughing happy girl who gave me multiple kisses (I got my first kiss from her tonight. Not just 1 but 8....not that I'm counting). God answered a prayer within minutes. Thank You God!

Please pray for our next two days. The trip has been great but it is time to come home. Pray for patience and positive distractions. We are looking forward to seeing every one soon.

Pictures!

Typical shop near our hotel

Who brought the toilet paper?

Mushrooms, seahorses, snakes, and dog paws...yummy at the Qing Ping market

Not quite Avon...Qing Ping market

Nice hair

Leaving behind Eric, our guide in Wuhan

Ella at Guangzhou folk art museum

Ella on bus

Pearl river as seen from our hotel room in Guangzhou

Ella gets OK at health check